So here I am the day after chemo, and the side effects are already starting. For whatever reason, my brain seems to be functioning worse than before. I’m having a hard time concentrating – harder than usual. I can’t read a long paragraph without losing the thread half way through. And forget trying to find the right word when I’m speaking or writing. I often have to leave a blank when writing and go back to it. I hate that part most of all. I’m a language/grammar/literature nerd, and not being able to read and write without putting a lot of effort into it bums me out. I used to be able to hammer out paragraphs and paragraphs of fiction in one sitting. Without having to edit much. Now, I can’t even write one paragraph for my blog without slowing way down and re-reading every word several times before hitting the publish button.
The depression is also hitting hard this evening. I know it’s the chemo and the steroids – much of the steroids are the extra ones I’ve had to take along with the antibiotics for the aspiration pneumonia I suffered a week ago. I’m still taking oral antibiotics through Saturday, and have one more day of the steroids. The good news is that my lungs have cleared, and I’m not coughing up a bunch of junk any more. And the wheezing has stopped, so no more giggling at the weird sounds coming from my chest. Spud appreciates that too as the noises seemed to disturb him. His responses were funny and kept me giggling so hard some nights I kept myself awake.
Other side effects, like the numbness in my face and the mucous membrane soreness and pain aren’t as bad because my dose of Taxol was reduced a little. But I’m still having them. I can put up with all of that as long as I know the drugs are doing what they’re supposed to do. And so far they are.
There have been some adjustments made in the other meds I’m taking – my diuretic was increased because the Avastin was causing my blood pressure to start creeping upwards, and the medication for my acid reflux has been doubled. I notice the reflux is worse on chemo day and the day after and then gets better. But I’m still having to sleep sitting up, which doesn’t make for a very restful sleep. I wake up dragging, and even napping during the day doesn’t help. I’m hoping the increase in the meds will help.
So basically I’m still here, and rapidly approaching my one year anniversary of diagnosis. One part of me still can’t believe I have lung cancer. And there are days when I don’t want to see or read anything about lung cancer. But I’m a researcher by nature, and I can’t resist digging deeper when I see an article about a new trial, or a new treatment, or a new diagnostic test. Sometimes I feel detached from myself and my diagnosis, as if it’s happening to someone else. I have since learned that there are components of PTSD associated with a diagnosis of lung cancer, so that would explain the detachment. And it’s something I will explore further at some point. But for now, I’m just doing the best I can to be here in the now and take one day at a time. And I suppose that’s all anyone ever does.
Onward and upward!
Yesterday went so well with chemo. My blood counts were good; my other blood work was incredibly normal; and my CEA is continuing it’s downward trend. I felt good, just a little tired and antsy from the steroids. I was even able to got to sleep at a normal time last night. Then everything changed. If you’re sensitive, you may not want to read the details of this medical issue…
I woke up shortly after midnight with the worst case of acid reflux I’ve ever had. It was so bad that I somehow aspirated into my lungs and was coughing so hard I threw up in spite of having taken my anti-nausea pill before going to bed. I was having a hard time breathing, and felt like my chest was on fire. But I couldn’t stop coughing and trying to clear the junk out of my lungs. This went on for at least half an hour and then subsided enough that I could catch my breath. But I was still coughing. I took cough medicine, Tums, and a different anti-nausea pill. I was finally able to get back into bed as long as I was sitting up and read for a while. Then I had to get up so came and played on the computer for a while. I was able to finally go back to sleep around 3 or 4 and slept until 9. When I woke up, I felt achy and headachy so checked my temperature; it had shot up to 99.8 – normal for me is 97.6 and under.
I was still having breathing issues, so called my onc doc’s office around 11:30ish. When my PA called back,I told her that on exhalation, I sounded like there was a sick cat mewling in my chest; she told me I’d better come in for a ‘cat’ectomy – gotta love that sense of humor!! She told me to come in right away for a CT scan as they were concerned about a blood clot in the lungs. I was sure it was more likely to be aspiration pneumonia from the reflux. The CT scan showed no blood clot, but no pneumonia either, but that wouldn’t be likely to show up for a couple of days anyway. So they gave me more steroids IV and an antibiotic IV. I have to go back daily for the IV antibiotic, and take the steroids orally every day for six days. And the CT scan showed that all but one of the tumors had shrunk – lagniappe!
But wait; there’s more!! In the infusion room, I used my foot to push in the footrest on the chair before I sat down. Except my foot slipped and I managed to rip off about 1/4″ of my big toe nail, which then wouldn’t stop bleeding – probably because of the Avastin and the daily aspirin. So I ended up having to have a compression bandage and an ice pack on my big toe, which continued to bleed for a good half hour. And Steve yelled at me for pushing the footrest in myself instead of asking him to do it. 😀
We were at the onc doc’s office from around 1 until 5:30 – we’re home now and my breathing is a little better. We’re waiting for the pharmacy to call to let me know my prescriptions are ready – more steroids and an inhaler to help my wheezing. And I have to take Tums 3 times a day in addition to the Omeprazole I’m taking twice a day for reflux. My breathing is a little better now, but I’m still coughing and wheezing, and my chest hurts still.
Never a dull moment, right?
The week since my last chemo infusion has been rough. It took about 7 or 8 days for my body and brain to feel normal again. I think that was mostly because of the steroids more than the chemo itself.
Friday morning, I woke up so jittery I thought I was going to jump out of my skin. I couldn’t sit still; I couldn’t concentrate or focus on much of anything. The upside of all that was I never had the severe fatigue that usually hits on day 3 and/or 4 after chemo. Although I didn’t have the fatigue, I still had the general malaise and brain fog that usually comes with the fatigue.
By Wednesday of this week, I was feeling better, and by Thursday even better still. So 8 days after the Alimta and all those steroids. In retrospect, I should have insisted that I get stepped down from the steroid push because I know what could happen. I don’t know why my team didn’t bring it up either, and I don’t blame them; I think they were too concerned in getting me through the immediate crisis to worry about afterwards. But since they think I need to up my prophylactic dose of Dexamethasone for next time, I’m going to insist they give me a schedule for tapering off whether I have another reaction or not.
Yesterday and today were the closest to a normal day I’ve had in a while. My hair is growing back and actually is long enough that it looks decent; I’m back to having to use my tweezers on my chin hair; my GI system is good enough to deal with extremely spicy Cajun food.
Life is good.
Yesterday was blood work and treatment day. My white and red cell counts are good and holding steady, and blood chemistries, platelets, and everything else is good, too. So I had my 2nd dose of maintenance Pemetrexed. One thing that the nurses pointed out was my red cheeks and neck, which evidently is a side effect from the steroids I’m having to take the day before, day of, and day after my treatment. I was anxious about the CEA level as it was starting to inch up a bit the last time we checked it. But the result wasn’t available until this morning. My PA called to let me know it had gone from 25.1 to 20 – I could have hugged her over the phone!
I can’t begin to tell you how relieved my partner and I are about this reduction. I was really nervous about it, especially since I’ve developed a dry cough and am having to use the Ventolin again. I’m thinking, and my PA concurred, that it’s probably allergies. March here in the desert is usually windy, and this March is no different. We had sustained 15-20 mph winds on Sunday with heavier gusts, and it’s been breezy ever since. The pollen count is in the extreme range, and will stay that way for a while. So I’m optimistic it’s just allergies. My lungs sound clear with no dead spots, no wheezing, just normal breath sounds. And that’s another relief because the primary tumor had caused lung collapse in the left upper lobe that has since re-inflated.
Now because the CEA is going down, and if it continues to go down or remain stable, I won’t need to have the PET/CT scan until after another 2 or 3 treatments – another relief. And I’m glad I picked the Medicare plan I did, because there are no co-pays and no deductibles; those were adding up a lot on my old insurance.
So today is all good news. And my rose bushes are budding like crazy!